Just Diagnosed and relieved

Crohn's Disease Forum

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May 30, 2009
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Since I was a freshman in high school, I had had symptoms close to IBS. My mother had the same symptoms for years. Years after the symptoms came and went.
Until recently I had not bothered to go to a doctor to seek help. The symptoms finally got severe enough that I had to quit my job because I was waking at 3 in the morning to drive an hour and a half into the utah desert to work on a construction site. I was carpooling for the first few weeks, the it got worst. I started to drive myself, and that seemed to relieve the stress. Soon though, it became even worst. I wold have to pull over in pain and end up in a false alarm. I began to ignore the pain which made it even worst again.
It got to the point to finally use the insurance and get diagnosed. It started with a stool sample. They found white blood cells, but did not further the treatment. Dissastisfied with the doc, we went to universtiy hospital which is widely known. They began with blood tests that found elavated liver enzymes. That led to an ultrasound with a result of inlamed bile ducts. That promted an MRCP, or an MRI of the gutt. Never heard the results of that test before I was finally scheduled for the colonoscopy. They found all the signs of crohn's. Extremely inflamed lower and upper intestines. The doctor had said she was suprised that i was not complaining of more pain.
I recieved the prescription of pentasa, which was amaizingly expensive. $550 a month. We are starting out with a 2 week supply, and then are to talk with the doctor if the symptoms resume.

How have most of you guys reacted and how quickly to pentasa? Has it worked or are there better, cheaper sripts?
 
hey dhanks and welcome!

im glad that you dropped that first doctor that wasnt helping you and sought out a new one. self advocacy is really important with this and also really hard to do, but it helps so much in the end to be a fighter for what you need.

i was dx a little over 10 yrs ago and pentasa was the first drug i tried. sorry to say it didnt do much to manage my disease, but as you will see from reading around here, every single case of crohns is different. so dont lose hope that what doesnt work for the next person wont work for you ok?
as far as insurance, well i dont have much advice on that. im still under my dads insurance plan (im 19) so im not even the one to deal with it. i just know that once we hit a certain deductible, all scripts after that are free. and with the meds im on and also my dad (has ms) we hit the limit in the first or 2nd month of the year.
do you know if your plan does something similar?
also im wondering if youre on the generic or name brand version of the drug. the bottle will tell you that. if its name brand, then generic should be much cheaper. but maybe pentasa is just an expensive drug, i really dont remember sorry!

well, keep asking questions and searching the forums for information. there is so much here to help you and many people who are willing to help too. always someone to offer support :)
 
Getting diagnosed is half the battle for many.

The cheapest drug is Low Dose Naltrexone (LDN). It costs me $35.00 a month. I also feel it is one of the best treatments, if it works for the person taking it.

You can do a search here to find out more. Also check out. www.lowdosenaltrexone.org

I hope the Pentasa works out for you.

Dan
 
Welcome to the forum, but sad to hear you have CD. Like the others said, it depends on your Ins. or lack there of. I have Ins, but my Entocort costs me $60.00 a month. Maybe talk to your Dr & see if there is anything he/she could give you that might be a little cheaper. A gal I work with has Colitis & her Dr gave her 6 discount drug cards @ $100 a piece to help with her scripts :) Good luck to you!
 
Are you able to tolerate sulfa drugs? You might want to ask your doc about sulfasalazine (brande name: azulfidine). It is very similar to pentasa, but it is quite a bit cheaper.

Of course, if you allergic to sulfa (like I am) -- bactrim, septra, others -- this won't be an option.
 
My Pentasa retails for a little over $300/month, entocourt is $800, and the Humira is $1600/month. I have a high deductible and have to pay full price until my deductible is met and after that I pay nothing. Pentasa is a "starter" drug and it did help me a little---at least it took the edge off.

Call around, I think the price on drugs is very variable. Also pharmaceutical companies give drugs away at very low cost to people who can show financial need. If you go surfing through their websites they have forms you can fill out.
 
I contacted my insurance agency, and all this time ive had rx coverage. That drops i to 100 a month. Wich is doable for now. I hope this works the best so i dont need to be prescribed something more expensive.
 
yay thats great

re other drugs--some drugs have plans that can assist you in paying for them. for ex humira and cimzia are the two im thinking of. they cost thousands each month but the assistnce programs might really help.
just so youre not too worried if you have to go on to something even more expensive.
 

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